As an oncologist in an academic center, I am referred people diagnosed with fairly uncommon cancers. While I wouldn’t say it happens a lot, it happens frequently enough. I often wonder what it’s like to be told, “You have a rare tumor.” When this happens, I have to re-educate myself: perform searches on PubMed, turn to colleagues around the country, and seek input from our multidisciplinary tumor group. Sometimes the tumor is so rare that no one has any real breadth of experience, and I find myself in a room with a patient, creating a plan without much data to draw from.

At one of my prior institutions, I treated someone for a rare sarcoma of the vagina. She had undergone surgery and radiation therapy; we opted not to proceed with chemotherapy. I left the institution for a new role soon after she completed her therapy, but thanks to social media, she found me again online. I hadn’t known she was following me, but she sent me a direct message letting me know it was her, and that she was doing well—that today, years later our initial meeting, she was declared “cured.” I was thrilled to hear from her after so many years and happy to hear her cancer had not returned. I invited her to join me to discuss her own singular experience living with a rare tumor. She generously consented to share her story, choosing to remain anonymous to ensure her privacy is maintained.

Q: What was it like when you were first diagnosed? 

A: Rare or uncommon health conditions and accidents seem to run in my family. In 2003, my father developed rhabdomyosarcoma in his calf. He underwent neoadjuvant radiation and chemotherapy, but ultimately needed an above-the-knee amputation. I was 33 at the time, and the experience left me terrified of sarcoma. So, when I was 42 and felt a lump on my vulva while taking a shower, I was convinced that it might be something serious. None of the doctors I consulted thought the growth was anything worse than a common cyst that could be surgically removed. However, I felt certain that I should advocate for an oncologist to perform the operation and biopsy the lump.

I received “the call” 3 days before Thanksgiving and immediately realized what my surgeon was about to tell me. My fear, my intuition was indeed correct. The growth was cancerous and, worse yet, it was one of the rarest likelihoods—a leiomyosarcoma of the vulva. Emotionally, I do not think my reaction was especially unique: I was slightly numb and overwhelmed. I heard the empathy in my surgeon’s voice, and I began to cry a little. I needed to get off the phone... to tell my sister, who is my best friend. 

A few days later, I had an appointment with my gyn onc surgeon and a medical oncologist. In my family, the predominant coping strategy is to assume the worst-case scenario and then modify our reactions after the fact. Within the first few moments in the office, I asked bluntly if I was going to die—if I had an expiration date. Thankfully, the answer was “no.” 

Q: We often refer to a new normal—that experience of life as different than before. Does that concept resonate with you? What's it like? 

A: Emotionally, the person I was during treatment was very different than the person I was after cancer. The support I received in treatment was unparalleled, but the transition back into “regular” life was very challenging for me. I knew I was capable of handling crisis situations—I had a purpose, a drive, a reason to use humor and appreciate small joys. However, even before the cancer, I suffered from an undiagnosed case of CPTSD (complex post-traumatic stress disorder), and as I learned from an earlier trauma, my high-functioning self came to the fore during a crisis but after the trauma, like other CPTSD sufferers, I felt lost. 

During treatment, my oncologists and surgeon allowed me to email at any time, and even though at that time I didn’t require sympathy, I felt very attached to my doctors. I found myself wanting to make their difficult job easier. I titled my emails with silly puns, such as The Notorious V.A.G. and the Red Vag of Courage. I gave my surgeon nicknames, and I even got to join one of my oncologists for lunch. I was deeply moved by their dedication and felt almost as if they were my friends.

Once I had recovered, I missed them greatly because I didn’t get to interact with them as often as I once did. I felt a steep drop-off in support, and I struggled with everyday life more once the tangible purpose of fighting the cancer was no longer my primary concern.  

Q: When did you first hear the word “cure”? How did it make you feel?  Is it a word you have embraced?

A: If I understand this term correctly, in reference to cancer cure marks a period of typically 5 years during which your cancer has not recurred. It has been 8 years since my last operation (I still require yearly chest X-rays and exams), and I have slowly been able to feel more fortunate. I suppose I am always waiting for the proverbial shoe to drop—a remnant of my previous, slightly superstitious line of thinking. Maybe it will just take time for the truth to become a more concrete, definitive reality... diagnosis: cured. 

So, when my current doctor told me I was “cured”, I found the declaration somewhat nebulous and a little confusing. I would typically associate a cure with a more definitive event: if your infected gallbladder is surgically removed, then you are cured. I had a difficult time absorbing the idea that I had been cured. I remember wanting to leap up and down with joy and to express my eternal gratitude to my oncologist… but I could not. I left his office feeling like I disappointed him. I even emailed and apologized for my seemingly bizarre lack of enthusiasm. I felt ashamed, guilty, and ungrateful. 

Q: How has the experience changed your views of the present? Of your future?  

A: Shortly after I was declared cured, the COVID-19 pandemic began, and the U.S. initiated its first lockdown. I remember emailing my oncologist to tell him I was experiencing intense PTSD and that I was terrified I would die from this modern-day plague, despite having survived cancer. I was equally afraid of losing anyone I knew or loved—including my health care team. 

Ten years prior to my cancer diagnosis, I had been in a horrific, near-fatal horseback riding accident, in which I was trampled. I suffered extreme blunt chest trauma, many fractures, and bilateral pneumothorax (complicated by severe bilateral MRSA pneumonia and E. coli). I was placed on life support for 2 weeks and remained in the hospital for over a month. I had to relearn how to walk and talk after the initial battle just to survive. The fact that COVID-19 was a respiratory disease triggered memories of my own experience of waking up on a ventilator and frantically ripping at the tubes sprouting from my body.

I found it heartbreaking to watch the news coverage of patients with COVID-19 dying completely alone in the overburdened hospitals. If they were fortunate enough (as I had been after my accident) to be taken off the ventilator, they had to endure weeks of intensive rehabilitation. My sympathy extended to the health care workers who were risking their own lives to treat infectious patients without proper PPE. Health care workers had been heroes to me in my life. My own experience with leiomyosarcoma and the accident lit a fire beneath me—I had to do something to help fight COVID-19.  

I knew there were groups forming across the country to create some of the desperately needed PPE supplies, such as masks, caps, and gowns. I bought my first-ever sewing machine, and with the aid of YouTube and hysterically funny FaceTime sessions with my sister, I learned to sew. I volunteered 8 hours per day, 7 days a week... for months. I produced more than a thousand masks which a local sewing group then distributed to those in need.  

Without a doubt, my own traumas intensified my desire to help others during the pandemic. My sense of empathy is my strongest personality trait and one that I am proud of—my experience with cancer only strengthened that drive. In the future, I hope to continue giving back to the health care community and fighting for a kinder society that values empathy and community over wealth and personal gain.  

Q: What should cancer doctors know about people who have "made it," perhaps in spite of an initially negative prognosis? 

A: I recently read about the concept of “toxic positivity,” and I think it is something that all health care professionals might want to consider. While I am proud of my ability to function positively and effectively in the midst of traumatic experiences, I am also acutely aware of the suffering that overwhelms me once I am out of danger—at precisely the moment when I’m expected to move on with my life. Post-cancer, I felt like a failure for not experiencing a radical sense of relief and joy upon receiving positive results. If I could not live my “best life” or be bold and fearless, did I really deserve to be cured? What if I could not be a “thriver”?  

It is natural that any oncologist will be excited to deliver good news to a patient about a disease they have dedicated their time to preventing or curing. But it is important to be aware of the full range of reactions that a patient might experience when hearing good news. It is possible that patients might be dealing with toxic positivity elsewhere in their lives and need to express their fears and doubts to their health care team. Such a response does not reflect a lack of gratitude, but actually demonstrates trust in the doctor-patient relationship. 

Moving forward, I hope that trauma will be explained in a tangible way to patients across the medical spectrum. Many people do not realize that each treatment and operation has an effect not only on the physical body, but also on our emotional health. Each system needs time (and perhaps guidance) to heal. As a society, we need more education around PTSD—especially in the age of COVID-19. Patients might have a past history of PTSD, CPTSD, or many other conditions. They might have a similar experience to mine, where they feel shame, guilt, and self-criticism about not experiencing enough gratitude for receiving another chance at life. I think further counseling and follow-up support would be extremely beneficial to most patients. At a minimum, they should understand that their reactions to a huge, life-altering event will be varied, surprising, and complex. All of those reactions are acceptable, valid, and do not negate the positive results of their cancer treatment. 

Thank you so much for sharing your experience with me, and for allowing me to share it here. I find it so interesting that the things we might think should be celebrated, such as “cure”, can be met with a mix of other kinds of emotions. I think the message that cancer experiences are unique to the person who experienced it is so important. While our intentions might be meant to be met with celebration, it’s important to ground them in each personal interaction. Fear of recurrence is something real and while it fades with time, I don’t know that it ever completely goes away. Acknowledging that that might be present—even after cure—is as important as the word itself. We all will do well to recognize it, especially when it’s a cancer that we rarely see.